Understanding Pulmonary Hypertension

[teafree1977]

I was dx'd in 2009; as of 2012, I'm having such a difficult time dealing with this...it's a daily battle!

[gadionson1]

how sad of that little boy...

[JackLovesMuffins]

I'm a 14 year old boy and I was diagnosed with Pulmonary Hypertension back in December as they went in to patch my ASD. Just recently, I was sponsored by MakeAWish and granted a wish. i have had many support and i hope for a cure soon.

[vikingscool]

@JackLovesMuffins almost same but I have Flolan for almost 10 years now. Flolan is best fit for my life with PH.

I was sponsored by Make-A-Wish Foundation, they granted me a wish, then I went to S.F. to see my cousin work at Stanford, and visit San Francisco with my family. Good times.

[KingLeoVlog]

I have what looks like the start of pulmonary hypertension, caused by sleep apnea. Having a sleep study done soon and hopefully this will help quite a bit. I just started a blog (vlog) on it to track what goes on. Good luck every one!

[vikingscool]

@KingLeoVlog My PH caused sleep apnea back in 2006 that when it began. I can't sleep well without having an oxygen tube in my nose.

[nongagueihtam]

I don't think I'll need a transplant even though I'm in state 4 out of 4, which is the most critical. I once forgot to take my medical treatment, and I saw a big difference. I don't want to forget that anymore. Before I was found to have PH, running 50 meters was getting me dizzy and I couldn't feel my body anymore, and also pain in the throat because the air was circulating really fast. Now sports is over for me, even at school. I don't really care about that, sports don't interest me...

[nongagueihtam]

I have PH and I was born with it. I'm now a 15 years old boy since mid August and my PH was discovered in May this year. Personally, I don' feel uncomfortable with this disease, I just have to be careful, which I already am. I passed pretty much all the mentioned tests. They aren't too bad. When it was discovered, I started taking a medical treatment, and I must say it works really well. I feel much better since I take it and I get breatheless really rarely. I couldn't dress up correctly before.

[every1lovstheslinky]

a got pph, didnt think they would youtube it pretty gd 2 get the word out :), dont knw meny people tht hav it tho :/ x x x x

[Agaravalia1]

@every1lovstheslinky I was diagnosed with PH back 2009 and today thanks to Dr. Robert Frantz and Mayo Clinic in Rochester I am now on a drug called Tyvaso and it is a solution that you put into an electronic inhaler and you breath it in. I take 5 breaths a day 4 times a day 4 hours apart and without the inhaler and two types of pills that I have to take everyday I would not be here or I would not be in the condition that I am in now. Thank you Mayo Clinic and Dr. Frantz you guys are the best.

[Littleangelgrr]

had ph , i am 21.. Today i have new lungs and a new heart... Transplant is still a hope..

[kat2156]

omg. my cousins died from pulmonary hypertension 10 months apart, and were ready to be married

[evelplay36]

i am sutters PHA too. life of tablet and my blood. 5 years now (13th July 2004 before my birthday (16th July) now sub!

[litebug12345]

I've been taking Levodyn for about a year. I've noticed that my blood pressure has gone down and stabilized, and I no longer have to take chemicals which had negative side effects. Levodyn just makes me feel better. I have recommended this product to people and my brother is now taking it with similar positive results.

[jamiedude88]

Excuse me PHA, im wondering if you think i should talk to my docter about PH. Everytime when i run around 500+ metres my body goes numb and i cant feel any body part. Then i go extremely dizzy. And i almost pass out. Also i get swelled up ankles randomly around 19 times a week. Could you get back to me as soon as you can? Thank you so much.

[PHAssociation]

Whether youre a PH patient or not, PHA encourages everyone to share information with their doctors on pulmonary hypertension because this is such a rare, little-known disease. While PHA doesnt give individualized medical advice, we do encourage you to speak with your doctor about dizziness, swelling, or any other health problem that you may be experiencing, as it may be related to PH or a number of other medical conditions. Thanks for your question!

-PHA

[happilylil]

i am taking Levodyn and it's really great. i never felt so energetic and my blood pressure got normal.